2 About the Musella Foundation The Musella Foundation for Brain Tumor Research & Information, Inc., is a 501(c)3 nonprofit public charity dedicated to speeding up the search for the cure of brain tumors and to helping families deal with a brain tumor diagnosis. We create and distribute educational materials, provide help matching patients to clinical trials, give emotional and financial support to brain tumor patients, support awareness and advocacy for brain tumor issues, and give grants for brain tumor research. We maintain the brain tumor information and treatment virtualtrials.com website; the co-pay assistance braintumorcopays.org website; and the fundraising walktoendbraintumors.org website. The Musella Foundation is one of the co-founders of the Heroes of Hope Grey Ribbon Crusade, located at the greyribboncrusade.org website. Heroes of Hope Grey Ribbon Crusade joins organizations and individuals as one united force against brain tumors. The group provides support for those affected by the disease and serves as a hub, allowing people to gather information and share resources, while providing a vehicle for fundraising.

3 Brain Tumor Guide for the Newly Diagnosed Eighth edition

4 Dr. Henry Friedman and Dr. Linda Liau reviewed and approved the contents of this guide. Henry S. Friedman, MD, is deputy director of the Preston Robert Tisch Brain Tumor Center at the Duke University Medical Center in Durham, North Carolina. An internationally recognized neurooncologist, Dr. Friedman has a long-standing career in the treatment of children and adults with brain and spinal cord tumors. He has written hundreds of research articles and his work has been showcased on several segments of the CBS program 60 Minutes. Dr. Friedman strongly believes that there is hope for patients who are being treated for brain cancer. Linda Liau, MD, PhD, is the director of the UCLA Comprehensive Brain Tumor Program at the Ronald Reagan UCLA Medical Center in Los Angeles, California. She is a neurosurgeon with a clinical expertise in intra-operative functional brain mapping and imaging for resection of brain tumors. Dr. Liau s research is focused on the molecular biology of brain tumors, gene therapy, immunotherapy, and brain cancer vaccines. Her work has been published in journals and textbooks and has been highlighted on several television shows. These physicians and the Musella Foundation have made every effort to provide accurate information. However, because treatments and side effects in this book may not be applicable to all people, they are not responsible for errors, omissions, or any outcomes related to the use of the contents of this book. Copyright 2013 by the Musella Foundation for Brain Tumor Research & Information, Inc. The Musella Foundation 1100 Peninsula Boulevard, Hewlett, NY All rights reserved. No part of the material protected by this copyright may be reproduced or used in any form without written permission of the copyright owner. ISBN

5 Brain Tumor Guide for the Newly Diagnosed An up-to-date and essential guide to Tools for getting organized Understanding brain tumors Your medical team Surgery, radiation, and chemotherapy treatments Insurance management Eighth edition The Musella Foundation for Brain Tumor Research & Information, Inc. This book is sponsored in part by a generous grant from the Richard M. Schulze Family Foundation.

6 Table of contents INTRODUCTION BY HENRY S. FRIEDMAN, MD SOME NOTES ABOUT THIS EDITION CHAPTER 1: WHERE, WHEN, HOW, AND WHY ME? 1 Starting now 2 How to use this guide 4 Survivor story #1 6 CHAPTER 2: FROM DAY ONE, A PLACE FOR EVERYTHING 7 Tools to help you get organized 7 Location, location, location 9 A personal diary 9 Legal papers 10 Advance directives and durable power of attorney 10 Phone numbers 11 Second expert opinions 11 The role of caregivers and loved ones 12 Mind, body, and soul: faith in healing and emotional wellness 14 Impairments and strategies for coping 16 Survivor story #2 20 CHAPTER 3: UNDERSTANDING BRAIN TUMORS 21 What is a glioma? 21 What does tumor grade mean? 22 How long has the tumor been there? 23 Are brain tumors the same as brain cancer? 23 Can brain tumors be removed surgically? 24 What are the survival statistics for patients with brain tumors? 25 Survivor story #3 28 CHAPTER 4: QUESTIONS TO ASK, AND A PRIMER ABOUT BRAIN SCANS 29 What questions should I ask my doctor(s)? 31 All about brain scans 31 Survivor story #4 35 CHAPTER 5: TREATMENTS OF BRAIN TUMORS 37 Clinical trials 40 Neurosurgery 43 Radiation therapy 44 Chemotherapy 46 vi viii

8 Introduction Henry S. Friedman, MD If you have this book in your hands, it is possible that you or someone close to you have just received one of the biggest shocks of your life: the diagnosis of a brain tumor. And as if that shock were not enough, let me add another: You now have to make immediate and important decisions about your brain tumor treatment. The medical team who made the diagnosis will provide advice and guidance. But because so many options exist what doctors to choose, where to be treated, what treatments are available, what clinical trials can be entered you need to become as informed as possible as soon as possible in order to make the best and most rational decisions. The goal of Brain Tumor Guide for the Newly Diagnosed is to provide you, your family, and your friends with a basic primer of the brain tumor terrain. As the subtitle promises, this book provides tools for getting organized and information about your medical team and treatment. This book can be a vital first resource as you begin the fight against your brain tumor, by providing context for the world of brain tumor treatment. A special feature of this book is that it is written with explicit reference to the virtualtrials.com website run and managed by the Musella Foundation for Brain Tumor Research and Information. The virtualtrials.com website was begun in the 1990s in order to list clinical trials and host online support groups for brain tumor patients. Since then, vi

9 the website has grown steadily. There were over 800,000 visitors in the past year, from 217 different countries. For many people, the website has become an essential portal to brain tumor information and a place of shared experience. The website lists brain tumor centers, hosts and manages online support groups, keeps an up-to-date catalog of brain tumor clinical trials, and describes current and experimental brain tumor therapies. The website also provides links to, and actually gives, financial assistance. This eighth edition of Brain Tumor Guide for the Newly Diagnosed is full of up-to-date links to different parts of the virtualtrials.com website and to other important websites. For some of these links, a QR code is provided for immediate access to a website by any smart phone with a camera and a QR reader app. QR reader apps are available for free from smartphone app sources. A final word. Although it might feel otherwise right now, you are not alone. However difficult your next months or years will be as you fight your brain tumor, there are others who have lived through the experience and have a lot to share with you. Please reach out. There is a community that can support you that wants to support you beginning with the wonderfully resourceful Musella Foundation. We wish you peace and health. Henry S. Friedman, MD Preston Robert Tisch Brain Tumor Center Duke University Medical Center Durham, North Carolina vii

10 Brain Tumor Guide for the Newly Diagnosed Some notes about this edition Internet links This eighth edition of the Brain Tumor Guide for the Newly Diagnosed contains many up-to-date Internet links to different sections of the virtualtrials.com website of the Musella Foundation and to other websites. Due care has been taken to ensure that the Internet links are accurate. But as we know, these links are sometimes changed by the organizations that originally posted them. At the virtualtrials.com website of the Musella Foundation, there is a separate webpage on which all the website links in this book are routinely kept up to date. To access that page to see a complete listing of the website links in this book, go to: booklinks.cfm. Glossary words The page-bottom glossary definitions of some words come from the National Cancer Institute s online Dictionary of Cancer Terms, a resource with 7500 entries related to cancer and medicine. The National Cancer Institute is part of the National Institutes of Health, which is one of 11 agencies that compose the Department of Health and Human Services in the United States. Access to the Dictionary of Cancer Terms is available at the National Cancer Institute website ( and also at the virtualtrials.com website of the Musella Foundation ( Survivor stories The survivor stories in this book are real but have been edited for this book format in order to highlight general themes and the specific interests of book chapters in which they appear. You can find the full stories for these survivors as well as stories for other survivors at the virtualtrials.com website of the Musella Foundation ( The Musella Foundation is deeply appreciative of all the people who have shared their stories at our website and in this book. Please share your story, too. viii

11 1 Chapter 1 Where, when, how, and why me? Whether or not it was a loss of physical balance that led you to be diagnosed with a brain tumor, surely a loss of emotional balance quickly followed. Every day over 100 adults will be diagnosed with a primary brain tumor and many more will be diagnosed with a cancer that has spread to the brain from someplace else in the body, such as the lung or breast. Each year, thousands of parents will hear those two devastating words brain tumor in regards to their child. There is no known cause of most brain tumors starting in the brain. There are indications that genetic factors or exposure to toxic chemicals or ionizing radiation may contribute to the formation of brain tumors. However, it is important to remember that you and your loved one did not do anything to cause the brain tumor and that each person and brain is different. There are over 100 kinds of primary brain tumors, some very rare. However, not all brain tumors, or even all malignant brain tumors, are invariably fatal. With surgery, radiation therapy, and chemotherapy, some types of tumors respond very well to therapy and may even be cured. While many of the more common tumors, such as gliomas, are not typically cured by surgical resection, there are more long-term survivors now than ever before, as new treatments have been introduced. You will have a lot of important decisions to make with this medical conditon. You can make them yourself, or you can select a loved one or team of loved ones to advocate for your care and treatment and to help you make important decisions. Not only will you have to make choices between treatment options presented to you, but you and your Chemotherapy (KEE-moh-THAYR-uh-pee): Treatment with drugs that kill cancer cells. Glioma (glee-oh-muh): A cancer of the brain that begins in glial cells (cells that surround and support nerve cells). 1

12 Brain Tumor Guide for the Newly Diagnosed advocate may have to actively seek out options that your medical team might not have access to. To read survivor stories of people with brain tumors at the virtualtrials.com website of the Musella Foundation, go to: Starting now We are here to help you sort through various treatment options and to be a resource for you so that you can further understand your disease. You must learn to question what you are told initially and, as treatment plans are put into place, to ask what qualifying factors your diagnosis and treatment plan are based upon. You must also seek out the foremost expert advice. Typically, your physician will have a plan to discuss with you following your initial diagnosis. This plan may include a referral to a neuro-oncologist or neurosurgeon for a consultation regarding treatment options such as surgery, radiation, chemotherapy, or a clinical trial (more on clinical trials later). While in some cases circumstances are such that emergency surgery is the only immediate option due to brain swelling or risk of acute brain injury, typically there is ample time to seek a second opinion and gather more information that can assist in your decision-making process. The initial diagnosis is often stated as a brain lesion. A lesion is an abnormal tissue from disease or trauma; basically there is something different about your brain and a part of it does not look like normal tissue. Further testing, by means of brain imaging, is usually ordered to get a better idea of the size, location, and impact of the tumor, as well as locating any cancers in other parts of the body. It takes experience to be able to see some of the subtle differences in scans done by magnetic resonance imaging (MRI) Neuro-oncologist (NOOR-oh-on-KAH-loh-jist): A doctor who specializes in diagnosing and treating brain tumors and other tumors of the nervous system. Magnetic resonance imaging (mag-neh-tik REH-zuh-nunts IH-muh-jing): A procedure in which radiowaves and a powerful magnet linked to a computer are used to create detailed pictures of areas inside the body. These pictures can show the difference between normal and diseased tissue. 2

13 1: Where, when, how, and why me? or by computed tomography (CT). A second opinion from an experienced doctor or team that frequently deals with brain tumors may change the initial diagnosis, in terms of either tumor type or grade, and thus may change your treatments. An MRI alone can be inconclusive (it may not be a tumor at all), making a thorough examination of all of your symptoms, and when possible, a biopsy, vital to your diagnosis. The most important factor in your care will be the experience of the team treating you. If possible, ask for a second opinion from an expert source, preferably a major brain tumor center that is familiar with advanced forms of diagnosis and treatment of brain tumors. Also, ask for a neuropathologist experienced in brain tumors to review your biopsy. In many cases, brain tumor centers can coordinate your treatment (radiation and chemotherapy) with doctors more local to you, so that extended stays near the brain tumor center may not be necessary. Your primary physician or oncology (cancer) specialist may not be familiar with the advances being made in the treatment of brain tumors. If your medical care team cannot answer your most pressing questions or is unwilling to consult on your behalf with available brain tumor experts, you must seek out further information and reliable sources for care, such as those found within major brain tumor centers. Many of these specialized centers will allow you to submit your MRI and CT scans, as well as biopsy specimens, for further examination directly without a referring physician. The brain tumor neurosurgeons and team members at these brain tumor centers perform over 50 brain surgeries annually (some as many as five per week) and may offer the most technologically advanced procedures with higher rates of survival. Your choice of surgeon and treatment team can profoundly affect the outcome of your care. If knowing your enemy (type and grade of tumor) is indeed half the battle, then having the tools to employ a strategy a strategy for life is equally important. Brain tumors can change, grow, and recur, so it is important to be organized and knowledgeable about your tumor s makeup and location, your medications and their side effects, and symptoms Computed tomography scan (kum-pyoo-ted toh-mah-gruh-fee skan): A series of detailed pictures of areas inside the body taken from different angles. The pictures are created by a computer linked to an x-ray machine. Neuropathologist (NOOR-oh-puh-THAH-loh-jist): A pathologist who specializes in diseases of the nervous system. A pathologist identifies disease by studying cells and tissues under a microscope. Biopsy (BI-op-see): The removal of cells or tissues for examination by a pathologist. The pathologist may study the tissue under a microscope or perform other tests on the cells or tissue. 3

14 Brain Tumor Guide for the Newly Diagnosed you might expect throughout your treatment, and to maintain an ongoing, open dialogue with your medical care team. Physicians rarely engage one another in the type of dialogue patients often assume is transpiring on their behalf. Being organized can assist you by ensuring all of your team members are up-to-date with current information at the time of your appointments and consultations. You and your advocate team must become your own primary-care manager! How to use this guide This guide is made available to help you understand some of the common decisions you ll be facing. It will answer some of the questions frequently asked by patients and caregivers and connect you with a support community. Additionally, it will help you get organized so that you can best advocate for the quality of care you need and deserve. Most importantly, this guide provides you with information on tumor types, the most current treatment options, and how to find major brain tumor treatment centers. Wherever possible, resource links to further online information have been provided for your convenience. Just type a URL web address into the browser on your computer, or scan the QR codes in this book with a smart phone, or click a URL web address if you are reading an electronic version of this book. If you ever have any questions or comments, please feel free to call us at the Musella Foundation at at any time between 10:00 AM and 6:00 PM ET Monday through Friday, and between 10:00 AM and 1:00 PM ET Saturday and Sunday. You can also submit questions by means of our website. Go to: 4

15 1: Where, when, how, and why me? CHECKLIST Get yourself ready to take charge. Learn to question. Seek out the foremost medical advice. Identify the medical team that will be treating you, and ascertain their experience. Don t be afraid to ask for a second opinion. Don t be afraid to ask for the assistance of a neuropathologist. Get organized you must be your own best advocate. Use the resources in this guide and at the virtualtrials.com website. 5

16 Brain Tumor Guide for the Newly Diagnosed Survivor story #1 It started with small things in 1999, mostly visual. My wife thought I was experiencing a stroke. I called my doctor at home on a Sunday. He had a scan set for Wednesday, my wife and I saw the neurologist and neurosurgeon on Thursday, and surgery was on the following Tuesday. I had glioblastoma multiforme (GBM). I received radiation and chemotherapy as well as stereotactic radiation. I was very fortunate to be at a teaching hospital. I had a recurrence in 2001 with successful resection during which they implanted Gliadel wafers. In 2002, they thought I had another recurrence, but it was only scar tissue and radiation necrosis. My only issues since then have been medications and a small seizure in addition to a minor impairment to my left side peripheral vision. I continue to work full time. I know how blessed I have been and I try to help others who are impacted by GBM and other brain tumors. As of July 2013, things remain pretty much status quo medically. I have learned a lot of things from my experiences; these are just a few of them: You will learn quickly who is comfortable and who is not comfortable in dealing with issues of mortality. Have someone with you to listen, ask questions, and remember. Several times the neurosurgeon told my wife that no one had ever asked him a particular question before. Don t fear knowledge. As my wife said many times, There is nothing you can tell us that is worse than we can imagine. God gave us the gift of life that brings uncertainty. When tough times hit, He can comfort us much as we can comfort each other. 6

17 2 Chapter 2 From day one, a place for everything Tools to help you get organized The diagnosis of a brain tumor can leave patients and their loved ones in a mental fog, a fog so thick with questions that determining where to begin, in and of itself, can be debilitating. There are ways in which you can regain control, stepping out from the fog and into the light of day. Organization is your key to obtaining the information you ll need to find the proper treatment necessary for your specific type of tumor. The following is a list of tools that has helped other brain tumor patients. A three-ring binder can become your best friend and treatment partner, easily safeguarding all the necessary information about your tumor type and treatment plan at your fingertips. Referrals to specialists or for a second (or third) opinion are often delayed by the need to obtain records and, sometimes, by records that have been lost along the way. Maintaining your own copies of the following items will ensure that your consulting physicians have access to all of your important documents at the time of your appointment. Many people maintain these records on their computer or flash drive and occasionally print them out and store them in the binder as needed since it is easier to carry a binder around. Also print out a copy of your current medications and allergies to store in your wallet or pocketbook in case of emergency. Items to keep in your treatment binder include: Medical history. Start with a copy of the first medical history form you are asked to fill out. This will list past medical problems, such as diabetes or heart problems, which may impact the treatment choice, as well as any allergies you have. An important allergy to note is one to either iodine or shellfish, as the dyes (contrast agents) used in some brain scans contain iodine. This will be helpful when you have to keep filling out similar forms. Keep it updated as things change. You can also ask your doctor for a copy of the history and physical they perform on you. 7

18 Brain Tumor Guide for the Newly Diagnosed Copies of MRI films and reports. Most radiological centers today can provide you with a copy of your MRI or CT scans on a CD that can be viewed on any computer. When you check in at the MRI radiology facility, it is very important to request a copy of the film or a CD along with the written report of the radiologist s findings. Ask BEFORE you go into the scanner, as it is easier for the staff than if you tell them afterward. Most office supply stores carry special three-hole vinyl pages that hold multiple CDs safely within a binder. All routine laboratory reports and pathology reports from biopsies. Different members of your medical team will benefit from recent laboratory results that may have been initially ordered by another physician. Having your own personal copies of all routine laboratory reports as well as pathology reports from biopsies, so that they are available for review on demand, will save time, increase your understanding, and in some cases eliminate the need for unnecessary blood work. As a bonus, if you are computer literate, keep track of lab results in an Excel spreadsheet so you can graph results over time and see how you are doing. Medication at a glance. It is important to disclose all the medications you take to your physician and care team members. Keeping an up-to-date medication record in your treatment binder (including herbal supplements and over-the-counter items) can provide a quick and clear snapshot of your daily meds at a glance, reducing the chance of error when more than one physician is involved with your care. You may experience symptoms that are medication related or side effects of a medication that one member of your medical team may not realize you re taking, and thus you may be incorrectly diagnosed or treated. Take your treatment binder to every appointment with every doctor and request that they review this list before prescribing any new medication. You should also request a copy of the drug formulary a list of covered medications from your insurance company and keep it in your treatment binder. It may be necessary for your physician to request prior authorization for some medications. Knowing this in advance can save you time and expense. Pathology report (puh-thah-loh-jee): The description of cells and tissues made by a pathologist based on microscopic evidence and sometimes used to make a diagnosis of a disease. 8

19 2: From day one, a place for everything Location, location, location Knowing the exact location of your tumor will assist you in many ways. By researching the functions of that part of the brain, you can more clearly understand (and be prepared for) many of the symptoms you are experiencing, or might expect to experience. Ask your physician to be specific about the location, perhaps even provide you with a diagram of the brain with a penciled-in tumor site. Ask also about what symptoms to expect if the tumor expands. To understand your tumor, and thus certain therapies available to you, you must understand your tumor s location. The American Brain Tumor Association has recently published in both English and Spanish a detailed and illustrated primer for patients and caregivers called About Brain Tumors. This detailed guide has an excellent discussion about different parts of the brain, with well-illustrated anatomical drawings. The English version of this primer as a PDF file can be found here: The Spanish version of the primer as a PDF file can be found here: A personal diary Keeping a diary is very important as you travel through various treatment options with specialists, beginning on day one. Recording your specific questions and concerns will help ensure that your medical team provides the answers you and your loved ones or caregivers need. You may want to create a separate section for each team member, writing down which doctor is responsible for the various aspects of your care, medication refills, routine lab work, referrals, and what was discussed at appointments. Questions can often arise after you leave an appointment, and being able to refer to these pages later may be helpful. It s also recommended that you maintain monthly calendar pages to record the start of new medications or therapies, and any bad reactions to them. The starting times of symptoms and side effects may be difficult to recall at a later date, but it is important to distinguish their origin. 9

20 Brain Tumor Guide for the Newly Diagnosed Legal papers Every doctor you see will ask you to sign a HIPAA privacy form. When you fill it out, write in that you want to specifically allow the following people to discuss details of your case with the doctor (or facility); then list by name your spouse / parents / children and maybe a friend. Then ask for a copy of the form, as they keep the original. This will help save time when you need to send someone to pick up reports or films, or to ask questions for you. When they tell you they can t give your children something or talk about something to anyone other than the patient, just show them your copy of the form and they have to allow it. Advance directives and durable power of attorney We all hate to think about these things, but it can save a lot of trouble later if you handle this now. An advance directive tells your doctor what kind of care you would like to have if you become unable to make medical decisions. A durable power of attorney lets you designate who will make medical decisions for you if you are unable to. The first time you are admitted to a hospital, they will ask if you want to fill out the forms for these directives, if you do not already have them in place. Do it, and ask for a copy and keep it in your binder. Or search google for Advanced Directives in [your state] (each state has different laws and forms). If you do already have these forms in place, bring them with you, and the staff will make a copy for your files and return the original to you. It is very important to tell your family who your medical power of attorney will be and to tell them what your values are and what kinds of medical treatment you would want or not want, including breathing machines and feeding tubes, if your condition were to worsen and you were unable to communicate or were in a coma. You may also want to consider drafting a financial durable power of attorney. A financial durable power of attorney designates a person of your choice to manage your finances if you become incapacitated and are unable to make financial decisions for yourself. Your financial power of attorney document should not contain medical directives, as this is covered in HIPAA (HIH-puh): A 1996 US law that allows workers and their families to keep their health insurance when they change or lose their jobs. The law also includes standards for setting up secure electronic health records to protect the privacy of a person s health information and to keep it from being misused. Also called Health Insurance Portability and Accountability Act and Kassebaum Kennedy Act. 10

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Understanding the Rehabilitation Process after No one can prepare a family for the trauma of experiencing brain injury. Following the injury the subsequent move from the hospital to various rehabilitation

Family Caregiver Guide Rehab-to-Home Discharge Guide In Rehab: Planning for Discharge The best time to start planning for discharge is just after your family member is admitted. While it may seem too soon

Understanding Spinal Cord Injury Tasha, injured in 1997. What Is Spinal Cord Injury? The spinal cord is the part of the central nervous system that contains the body s longest nerve fibers. It serves as

Incidental brain cavernomas Information leaflet for people who do not have symptoms from their brain cavernoma Website: www.cavernoma.org.uk E-mail: info@cavernoma.org.uk Registered charity number: 1114145

Family Caregiver Guide Doctor Visits Caregiving involves not only major crises, but also routine experiences like going to the doctor. HIPAA is a federal law that protects patient privacy, while allowing

RESEARCH EDUCATE ADVOCATE Just Diagnosed with Melanoma Now What? INTRODUCTION If you are reading this, you have undergone a biopsy (either of a skin lesion or a lymph node) or have had other tests in which

Scan for mobile link. Brain Tumor Treatment Brain Tumors Overview A brain tumor is a group of abnormal cells that grows in or around the brain. Tumors can directly destroy healthy brain cells. They can

The Grieving Process Lydia Snyder Fourth year Medical Student What is Grief? The normal process of reacting to a loss Loss of loved one Sense of one s own nearing death Loss of familiar home environment

What you can do to help your child in pain About pain A child with cancer or other diseases will likely have pain at times. The pain can keep him or her from being active, from sleeping well, from enjoying

There s a lot to think about and many important decisions to make when you or someone you care for has multiple myeloma. It s important to have an ongoing conversation with your healthcare team throughout

National Institute on Aging AgePage Depression Everyone feels blue now and then. It s part of life. But, if you no longer enjoy activities that you usually like, you may have a more serious problem. Feeling

TM Understanding Depression The Road to Feeling Better Helping Yourself Your Treatment Options A Note for Family Members Understanding Depression Depression is a biological illness. It affects more than